This blog is made to share news on Alzheimer’s Disease in India. To raise awareness among the population in and from India, inform people of the resources they may have in their country and about actions taken by organizations. Also, it aims to support families and caregivers there to cope with this disease; help researchers worldwide and advocates in collecting datas and infos, develop views on the local Public Health Policy toward the affected elderly population in India.

Alzheimer's Disease in India Consultancy Service

If you have a project, contact us for advice at hendi.lingiah@gmail.com

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Access NGOs, infos, news updates, support and discussions....at the following links :

Report "Situation Analysis of the Elderly in India", June 2011; Central Statistics Office Ministry of Statistics & Programme Implementation, Government of India.

"In India with majority of its population aged less than 30, the problems and issues of its grey population has not been given serious consideration and only a few studies on them have been attempted in our country. To reap the advantage of demographic dividend, the focus is mainly on the children and the youth and fulfillment of their basic needs for proper development.

Also the traditional Indian society and the age-old joint family system have been instrumental in safeguarding the social and economic security of the elderly people in the country. However, with the rapid changes in the social scenario and the emerging prevalence of nuclear family set-ups in India in recent years the elderly people are likely to be exposed to emotional, physical and financial insecurity in the years to come.

This has drawn the attention of the policy makers and administrators at central and state governments, voluntary organizations and civil society."

About KNOWLEDGE BASE on AGEING POPULATION in INDIA : REPORT : "Situation Analysis of the Elderly in India", June 2011; Central Statistics Office Ministry of Statistics & Programme Implementation, Government of India.

"In India the size of the elderly population , i . e . person s above the age of 60 years is fast growing although it constituted only 7 . 4% of total population at the turn of the new millennium .

For a developing country like India, this may pose mounting pressures on various socio economic fronts including pension outlays, health care expenditures , fiscal discipline, savings levels etc.

Again this segment of population faces multiple medical and psychological problems.

There is an emerging need to pay greater attention to ageing - related issues and to promote holistic policies and programmes for dealing with the ageing society ."

"Special provisions needed for healthcare for elderly, concludes study". Article by AARTI DHAR, THE HINDU, NEW DELHI, December 26, 2011.

In Tamil Nadu, the most common self-reported chronic morbidities among the elderly were chronic joint pain (61.3 per cent), eye and ear problems (38.4 per cent), hypertension (20.7 per cent), diabetes (13.9 per cent), heart diseases (4.4 per cent), chronic respiratory illness (2.9 per cent), stroke (1.2 per cent) and chronic mental illness (0.6 per cent).

However, in Kerala, 71.6 per cent of the elderly had at least one of the chronic morbidities at the time of survey with hypertension topping the list (57.3 per cent), chronic joint pains ( 37.5 per cent), diabetes and ear/eye (32 per cent each), heart disease (17.1 per cent and asthma (11.4 per cent).

....."Also, in Tamil Nadu, most of the chronically ill elderly (46.5 per cent) accessed government healthcare services, followed by private hospitals (31.4 per cent). Five per cent accessed health care by village-based health clinics of HelpAge programme while 15.2 per cent took no treatment and the utilisation of Indian Systems of Medicine was less than 1.5 per cent on an average.

In Kerala, surprisingly most of the elderly received treatment from private hospitals (55.8 per cent), followed by government hospitals (34.6 per cent). Five per cent had adopted Indian Systems of Medicines and 2.4 per cent did not take any treatment."
....

Tuesday, December 20, 2011

Testimony edited with permission of Mrs Anusuya Datta, primary caregiver with her mother in Delhi of their husband/father suffering from a neurodegenerative disease, a type of dementia : Progressive Supra Nuclear Palsy (PSP).

“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.

Readers are invited to enrich this section to make itan experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

A Family Caregiver sharing her experience in Delhi:

"I am from India, New Delhi. My father has been recently been diagnosed with PSP (progressive supra nuclear palsy) with frontal dementia. the docs said its pretty advanced stage. he suddenly took a plunge two months back and from a walking talking man he is bed ridden with almost zero speech abilities and even abillity to understand basic requirements of life like food and toilet etc. we are quite new to the whole thing. Dad had been showing some very weird behaviour -- to the point of being extremely selfish and conceited in the last few years.

We had suspected dementia or some kind of mental problem but since his memory was more or less intact, The docs never took our worries serioiusly. Meanwhile his movements were getting slower and difficult. the orthos we consulted couldnt come up with any reasons naturally. Its only when he has taken to bed and cant walk without help and shows a very prominent backward gait and almost zero eye movement and a mask-like face -- which i am told are the give away signs of PSP.

To cut the long story short, I am here to get some first hand knowledge about how to deal with such patients. We dont have much support in terms of local support centres or counsellors. Also, I believe world over not much research has been done on PSP."

"In delhi there is next to nothing in terms of supprt and good diagnosis. From the little I have interacted and read up in the last few months I think the indian govt doesnt have a policy on dementia and general elderly care. dementia is a mental disease for the elderly here.and as per indian mindset,elderlies who need care are always destitutes or people who are not taken care of by their children. There seems to be no middle ground.

I dont know in terms of research, but at least that hasnt created awareness or even empathy among the medical fraternity at large to even diagnose the disease instead of dismissing it as just another mental/spousal problem.which is what we faced for the last 2/3 years. When dad was showing distinct signs of dementia, the docs said it was his problem with mom or us, may be we didnt treat him right etc etc.

Finally when he fell sick and lost almost all capabilities of moving or speaking etc, Even then the docs at a very premier institute of mental health and behavoiur (VIMHANS) in delhi dismissed it as not dementia. They said he is a selfish man with selfish needs and there is nothng that can be done about it. They kept him for one and half months and ran tests and drugs on him like whatever they felt like. Finally they couldnt explain what his problem was.

Later when I took him to another establishment under the supervsion of another doctor who deals in dementia and geriatric studies, just by looking at his gait, eye movement and his history they diagnosed his problem as PSP with frontal dementia.

I just dont get it. either the first set of docs simply didnt care, or they didnt know.thats how I have been seeing people around us behaving. Also, in terms of supprt groups, trained attendants.there is simplky next to nothing, at least in delhi. and cost? lets not even talk about it! there is no sate support. everything -- from diapers to attendants -- are so expensive. in india, its supposed to be a disease of the rich its just been a few months and we dont even know as simple middle class people how we will drag it for the years to come!!!!"

Alzheimer's Disease in India :

Thank you so much for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your mother feel comfortable through the disease.

Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.

So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.

Saturday, December 17, 2011

"Questionnaire on possible reasons for the Under-Diagnosis of Alzheimer’s Disease and Related Disorders in India. (at the GPs level). This questionnaire is only a start for a more comprehensive survey including the different aspects ( medical, socio-cultural, economical...)of AD under-diagnosis in India today.

To all my friends and members living in India, in the aim to better understand the detection process regarding Alzheimer’s Disease and Related Disorders in India, I made a questionnaire (yes another one;-).

I’d like you to answer sincerely as the questionnaire will remain anonymous. It is a good way to convey and discuss altogether of the “picture of the situation” patients, their families and professional carers in India are facing. I’ve tried to be exhaustive but I certainly forgot many options.

Don’t hesitate to discuss and give your explanations/views/insights for a better understanding of this specific situation in India today, to find ways to improve the diagnosis.

All constructive inputs are welcome.

I'm interested in your answers according to the experience of each one of you in India that's why I sent the questionnaire to each of you. It'll remain and treated anonymously for you to feel safe to share your personal insights as I am interested in that too.

Also it'll helps us to start a discussion and get tracks to work on for a better improvement of the "dementia carepath" in the future in India. To voice our concerns toward the authorities in the field and give us more weight in the decision-making process for our community.

“According to your experience, what could possibly be the reasons for which Alzheimer’s Disease and others Dementias may be under-diagnosed by Medical Doctors in India?”

To reply to the 20 questions-Questionnaire: Put an X after the statement you’re agreeing with.

1° Elders and their families usually don’t come for consultations considering it is Normal Ageing?

2° Elders and their families are not enough reached and sensitized by volunteers working in the eldercare field in India?

3° Elders and their families usually decide not to undergo the diagnosis process?

4° General Practitioners usually consider that it is Normal Aging?

5° General Practitioners usually consider that it is not their medical specialty?

6° General Practitioners usually consider that more geriatric trainings should be provided to them to better detect the various dementia syndromes?

7° General Practitioners usually consider that they don’t have enough inputs to provide the patient and his family about dementia syndromes and care supports?

8° General Practitioners usually consider that there is no identified official carepath to guide the patient and his family on in India?

9° General Practitioners usually consider that there is no official geriatric guideline and recommendations in India to better support them in their practice?

10° General Practitioners usually consider that there is no need for official guidelines and recommendations to follow in India?

11° General Practitioners usually consider that there is no need for Comprehensive Geriatric Assessment in the field of Dementia in elderly people?

12° General Practitioners usually consider that geriatricians and gerontologists are too scarce resource and then hard to find/reach in India?

13° General Practitioners usually don’t identify enough the different Care Team members involved in the holistic approach in dementia?

14° General Practitioners usually don’t locate the Dementia Care Teams in their respective settings?

15° General Practitioners usually consider that it would be too costly for the patient and his family to undergo a diagnosis? (in term of financial cost, energy and time),

16° General Practitioners in India usually consider that they have a limited role in long-term care of dementias?

17° General Practitioners usually are not enough informed about the non-pharmacological and psycho-social interventions?

18° General Practitioners usually dismiss the value of the non-pharmacological and psycho-social interventions?

19° General Practitioners usually consider that they can’t do anything in Dementia Care and don’t go beyond that statement?

20° General Practitioners in India usually consider that ‘nothing can be done’ in Dementia Care and don’t go beyond that statement?

If you participate to the questionnaire, please send your response to Hendi Lingiah's Facebook inbox, or copy and paste and email it at hendi.lingiah@gmail.com

It is based on your personal experience of the AD carpath in India though you may or may not be a medical doctor and it remains anonymous. The instuctions are provided on the links; your constructive inputs are welcome.

Thank you for taking the time of reading and responding to the questionnaire,Hendi Lingiah Clinical Psychologist

Friday, December 16, 2011

Worry’s and concerns drifting through my mind, Dementia, you really are just one of a kind,My head pulsates with a million thoughts,Working things out, answers sought,Frightened look within my eyes,Open mouthed, silent cries,Trying to remember where I am,Trying to remember all I can,I remember all, when I was a boy,Clear blue skies, my favourite toy,But ask me about yesterday,Recent memories, yet so far away,Soon my eyes fill with tears,Of unknown time, missing years,I sit and ponder about tomorrow,With heavy heart so full of sorrow,I only wish a cure would come,And be salvation, just for some,But until then, I have this curse,Trying to explain within this verse,My daily fight with this awful disease,I just wish my mind would ease.

"Shefali Chaudhuri, the mother, is 93 and a demonstration of courage against all odds. In many ways her life began at 75 when she learned that her daughter had Alzheimer’s.

However, she found a way to convey hope, optimism, reassurance, dignity and respect for her daughter as well as for all of us. I have known her for the past 13 years and seen her do the impossible care – 24 hours a day, 7 days a week, 365 days a year. I have seen her intense concern for her daughter and unstinting generosity with her time."

We note the number of persons over the age of 60 years and older who suffer from dementia in India is an estimated 3.7 million in the year 2010, with 2.1 million women and 1.5 million men affected by it.[1]

We observe and stress, the devastating and debilitating impact of dementia on the individuals suffering from it, the families and caregivers of these individuals and society in general, robbing the afflicted persons primarily of their Dignity and Self- Respect, of their memory, cognitive functioning, their ability to carry out their daily chores and participate in community life, burdening families and society with the intense costs, both direct and indirect, of health and social care related to dementia;

We observe with concern that the healthcare needs of persons afflicted by dementia are not recognized separately from the other mental health care needs of older persons, that these are not accorded the priority in government planning and programmes, and that India does not have a separate national policy on dementia and neither a national strategy on the same;

We acknowledge the declaration adopted by the International Longevity Centers- Global Alliance (ILC-GA) partners at Cape Town in 2010 and the foresight of the governments that have implemented the National Plans for Alzheimer’s Related Disorders or the National Strategy for Dementia.

We affirm the human rights of all persons, within the context

of this document, emphasise the human rights of the

older persons with disabilities. We recall the International

Covenant on Economic, Social and Cultural Rights which

recognizes the right to ‘the enjoyment of the highest

attainable standard of physical and mental health.’

We also recall the Convention on the Rights of

Persons with Disabilities which obligates State Parties

to implement measures to promote and protect the rights of

persons with disabilities including dementia;

We also note that the Planning Commission as well as the

revised National Policy on Older Persons of India have taken

cognizance of the issue of Dementia and have suggested

concrete measures to address the issues and concerns of

people affected by dementia;

We invite all the stakeholders of the cause of population ageing

at the state and national levels to support and adopt this

Pune Declaration on Dementia and strengthen cooperation

in addressing dementia and its impact.

Now, therefore, the Alzheimer’s and Related Disorders Society of India

Proclaims this Pune Declaration on “Dementia- the need for a

national strategy of India” to be a call for action from all levels

of government, and for civil society, academia, communities and

individuals to promote and protect the rights of persons with

dementia as well as the rights of their family members and

caregivers, by:

1. Engaging in a multidisciplinary dialogue to establish

a common framework of standards for the prevention,

diagnosis and treatment of dementia;

2.

Urging the government to develop and implement national

integrated policies and plans of action dedicated to dementia,

including a national strategy on dementia, as well as

comprehensive policies and plans of action on ageing

which incorporate dementia;

3.Urging increased funding by governmental and non

governmental sources of research on all aspects of dementia

and associated caregiving;

4.Requesting and urging pharmaceutical companies to supply

affordable dementia medications;

5.Urging the government to support the provisions for the training

of healthcare professionals in geriatrics in general, and in dementia in